I'm sure I put it down here somewhere

Thursday, 16 October 2014

The government is actively making decisions that make it harder for disabled people to find and stay in work.

This, despite their rhetoric of work being good for you.

You'd think a government scheme that brings in £1.48 for each £1.00 spent on it (ref. 1 below) would be a flagship scheme, widely trumpeted and funded to the gills. But no, Access to Work, a fantastic scheme, that met the costs linked to meeting disabled people's access needs so they wouldn't disadvantage either employer or employee is being screwed around with, and is turning into a car crash.

Disabled workers are being made to wait 6 months upwards for decisions on whether the scheme will cover their needs. For some, this is too long, and people are having to leave jobs before decisions are made.

Previously, Access to Work was administered from multiple regional offices. Individuals would be linked to a specific advisor, who would understand the detail of their conditions, work, and requirements. This meant less admin time for both worker and government employee as explaining every last detail of work roles, conditions, and needs only needed to happen once.

Now, those regional offices have been closed, and a smaller number of central offices have opened. Those experienced in the system have lost work, and new staff have been employed. Workers no longer have a dedicated advisor, so have to go into minute detail every time they contact the AtW office. Hours can be lost to repeated phone calls - all time spent on admin that a non-disabled worker doesn't have to do. And all costing taxpayers' - our - money, as an inefficiency has been added to the system.

I have a small amount of self employed work as a printmaker. I need to go to art fairs to sell my work - just relying on internet sales isn't enough. I am medically unfit to drive, so need to take my work - including framed prints up to 60cm square - on the bus, or in taxis. I struggle to lift and carry heavy items, so need help with this.

Formerly, AtW would help with taxi costs (within reason) to get to fairs, and a support worker, to help with physical tasks I can't manage. Bear in mind this is stuff a non-disabled person could do alone. However, recently AtW are asking for proof I have a profitable business before they'll consider me eligible for support.

How many self-employed people turn a profit in the first couple of years of operation?

I am only taking the same risks that a non-disabled person might take, but to have my access costs funded, I'm being asked to prove I'm paying NI and turning a profit immediately. To do that, I need to get to fairs, to expose my work to the public. To do that, I need support to get to those fairs. To get that support to got those fairs I need to apply to AtW. And if I cover the the support myself, I'm having to earn half as much again before I turn a profit because 50% of my earnings would go on access support... You see the Catch 22?

Access to Work should be more widely available and better funded. It can really act to remove barriers to work for disabled people, and secondarily creates employment through both the infrastructure of the scheme, and through the employment of trainers, mentors, support workers and interpreters.

I strongly believe if there is any contraction in the Access to Work scheme the government is both shooting itself in the foot as fewer disabled people will be able to stay in work, and will be making yet another decision that actively worsens conditions for a group of people who already face systemic discrimination.

The government can choose to act to remove barriers to work for disabled people here. Challenging systemic discrimination should not be falling on the shoulders of those who already carry the burden both of that discrimination, and live lives that carry the challenges of impairment. As a government, you have the capability to lift that burden significantly, and not to do so is to shirk your duty. Those who have been placed in power by the country should use that power to better the lot of those with the least, and disabled people are amongst those both with the least, and who will struggle the most to change their own situations.

Monday, 13 January 2014

I had steroid and anaesthetic injections in both hips just before Christmas to try and reduce the burning nerve pain I have down the outside of my legs, and to make it clearer whether the pain I have is coming from my hips or back (or both, and to make it clear what is coming from where.)

Before the procedure I was given very little information, and nothing I could find online was particularly clear or detailed. My main anxiety was down to this lack of information. I knew it was a common procedure with low complication rates, and that if it didn't help, it was unlikely to make things worse.

A friend's sister is having the same jab, but in a different place, and wanted a bit of info, so I sent the following as an email. It seemed sensible to put that here so maybe it will be useful for someone else, too.

The procedure was amazingly low discomfort - so much that I'd not worry about getting my back done, and am thinking of asking about that.

I went in early in the morning, it's counted as day surgery, but it's not done with any sedation or anything, just local anaesthetic where the injection will be done. I was allowed to eat & drink as normal beforehand.

I walked into the theatre & hopped on the table, they swabbed my hips with iodine stuff and stuck sterile drapes over my midriff, with just two holes where they needed to get to the skin. They did the anaesthetic injection which was a little stingy using a thin & not very long needle. They did a couple of jabs of anaesthetic each side, using the same syringe & needle for each.

A portable x-ray machine had been wheeled in shortly after I lay on the table. They took a first image, and they popped the first big injection in - it was a spinal needle, so 4-5cm long or so, with a cannula around it. They took another image to check it was in the right place, then took the needle out leaving the cannula in place. Then they attached a syringe to the cannula and popped the steroid / anaesthetic mix in, checking after it was all in with another x ray.

These were lowish dose x-rays, so several in the same day isn't a problem,

At one point there was a dull pressure ache down my thigh, as the steroid went in, but the whole thing was far less painful than anything my body does to me. Each side took about 5 minutes maximum.

When they had finished, the peeling off of the sterile drape was the most painful part, as the adhesive part of the drape gave me a free waxing >_<

After this, I was wheeled up to recovery, then to the obs ward to have a cup of tea & biscuit, and show the nurse I could walk - which I could.

I had no increased pain at all, it was like the burning in my legs was switched off. This is a good response, and some increased pain for a couple of days can be experienced. As the local wore off, before the steroid kicked in my hips were a little grumpy, but less than they had been.

I went to the shop I do odd shifts at for my shift straight from the hospital, sitting on hard chair thee for about 4 hours with no more than my regular pain.

Pain wise, it's been 2 months now and my thighs sometimes have a bit of soreness, my hips ache a bit, but it's dialled right down, and has let me get a lot more exercise. I feel like it might be starting to wear off, annoyingly, but I need to see how it goes. I've not needed my crutches since the jabs, and have been able to reduce my tramadol intake by 1/3.

Overall, it's a very straight forward procedure, and although unpleasant, is IME less unpleasant than dental work and a lot less sore than the pain of trapped nerves.

Sunday, 4 August 2013

This is my response to the DWP's consultation on the Moving Around activity - specifically with regard to their plan to not automatically award Enhanced Rate to people who can only walk from 21 - 50m, with or without mobility aids.It's not amazing, but I want it to be in public so the DWP can't try and claim no one was clearly against the distance reduction.

Someone
who can only walk 21-50 metres with a mobility aid does not have enough
mobility to not need considerable support to live a full and independent life. The
very use of a mobility aid often makes doing some things harder. I walk with
crutches – automatically this means I can’t carry more than a very small amount
of shopping, for example. Whilst they mean I can walk further than I could
unaided, they also create an access barrier. On balance I find them worth that
inconvenience, but that barrier is still very real, with real consequences.

Given
access to schemes such as Motability are based on receiving higher rate DLA,
and then Enhanced Rate PIP, people who have a small amount of mobility will be
severely impeded by losing access to those schemes.

The
DWP itself has estimated some 90,000 people will lose their Motability
eligibility – which includes the hire of powerchairs, so that really is causing
people to lose their means of mobility.

Many
people can’t drive precisely because of their impairment. If public transport
is inaccessible to people because of distance to stops / stations, or not being
able to get on trains or tubes, or buses causing pain or nausea or sensory
overload, the only alternative is to take taxis. Taxis are expensive, so
without access to adequate benefit payment – which Enhanced PIP would provide –
taxi journeys would be out of of reach for people on Standard Rate.

If
people need to use taxis to get around £20 won’t pay for more than 2 or 3 cab
journeys, if you’re lucky. Which will see people who need to travel having to
decide between which to travel to - GP, hospital appointments, adult education,
the Jobcentre, voluntary work, - heaven forefend disabled people should want a
social life and to see friends or family!

21-50
metres is not far enough to get to many bus stops, or from one’s front door to
a local corner shop, or between benches on a high street.

To
get to work many people – including disabled people – need to get from public
transport to their place of work. For how many people is this less than 50m? I
suspect not many. For me, it’s a 180m walk. Taxis can’t get to all workplaces
so Access to Work isn’t necessarily going to be able to meet people’s transport
assistance needs.

Supermarkets
are bigger than a 21-50m walk to get around. Bus stops near supermarkets tend
to be more than 20m away from the front door. The assumption that everyone has
access to a car to get them to a supermarket is deeply flawed.

Many
disabled people need to have shopping delivered. The cumulative delivery costs
of shopping online for the bulk of one’s needs shouldn’t be a burden on
disabled people. The point of benefits like DLA / PIP is to mitigate these
extra costs. If it is only a small sum, there’s no way it’ll stretch to meet
all of these extra costs. Someone with mobility as restricted as only being
able to walk up to 50m is likely to also have trouble standing for extended
periods – problems queuing are difficult to mitigate. Problems carrying
shopping means often having to rely on other people to carry things for you –
which if someone lacks support of people who can do this, means needing to pay
people to do this.

Being
unable to walk less than 50m even with an aid, should qualify someone
automatically for Enhanced Rate PIP.

I
will go further. Being unable to manage 100m should continue to be the distance
at which it is considered someone’s mobility is considerably impaired. That is
far enough to hobble to a corner shop & back, over to a post box &
back, or from a bus stop to a shopping centre’s wheelchair hire office. Being
effectively tied to one’s house by a piece of string 50m long (because you have
to get there AND BACK) is incredibly restrictive. If that piece of string is
cut down to 10m, that’s only to the garden gate. That is cruel, and is going to
further restrict disabled people who are already living lives restricted by
pain, fatigue and immobility.

There
is a choice now with PIP. Choose to enable people living with impairments, or
to further disable those people. A government that actively creates policies
that worsen the lives of disabled people is inhumane and cruel.

I
also want to add when I responded to the PIP criteria before, 20 metres
distance was nowhere to be seen – this late addition consultation should never
have been needed. Again, this adds a burden to disabled people, requiring us to
repeatedly consult.

Thursday, 18 July 2013

The New Bus for London / New Routemaster has been chugging around selected London routes, boiling its top-deck passengers and irritating me every time I see one.

I loved the old Routemasters, but I also appreciated that they'd done their job and needed to be retired. They weren't comfortable to travel on, and if you had luggage / shopping / a buggy / were a wheelchair users / had impaired mobility / long legs... etc etc they were either less than ideal or totally inaccessible.

As a bus designed from scratch, the New Bus for London could have been designed with all of London's passengers in mind. Instead it seems to be a step backwards in accessibility terms. Design choices have been made that are active barriers for some disabled people.

The wheelchair user's space has been designed with, seemingly, only smaller manual wheelchair users in mind. Handrails have been put in awkward spaces, and it's just not big enough for larger powerchair users.

"Black and white blinds were chosen when designing the New Bus for London as these are in keeping with the traditions of the original iconic Routemaster bus, which partly inspired the design of the bus and its front and rear profile. They provide information in a format that is clear and legible for passengers, particularly at night when it is back lit.

As it meets legibility standards for contrast and visibility, no consultation was required" (my highlighting)

Most guidance I can find on legibility says yellow text on black provides best contrast for visually impaired readers, and the response from TfL contradicts the earlier information on TfL's legibility standards.

To me, this seems like a backsliding of access provision - a choice
of style over readability for a wider group of people, and as such is a
discriminatory choice.

This, combined with the decisions around
the space for wheelchair users being less than ideal (and again, worse
than existing spaces on other buses) makes me feel like the design team
for this bus and Boris Johnson as the figurehead of this project, don't
care about disabled people being able to travel around London, and are
happy to actively place barriers in people's way.

Wednesday, 6 February 2013

The Independent Living Fund was a scheme whereby people with high levels of care needs were enabled to live independently, in their own homes rather than in residential care, through personal care being funded from central government.

Local councils have a responsibility to provide care for residents who have care needs, but in reality many councils are rationing this care and only providing it to those in the most desperate need - and then, only providing the minimum required. So someone who isn't incontinent, for example, may be put in nappies overnight rather than fund a personal assistant to assist that person with toileting.

Yes, it is councils' responsibility to provide social care, but the
Coalition knows councils have shrinking budgets - they're the government
providing those bloody shrinking budgets to the councils! All they're
doing is going "Not my problem" about everything, and shoving it all
onto other people's budgets.

I think the Tories hide behind "localism", and know people
will suffer as tasks fall to different regions to legislate, when
dealing with some things nationally is realistically the only way to
ensure fair access to those things.

There are many people supported by the ILF - one woman is someone I know through work, Sophie Partridge, who has put a video together voicing her concerns.

The Independent Living Fund really did support some of those the Tories refer to as "the most vulnerable in society", people with incredibly complex care needs, who need 24 hour support. The Tories have closed it, and councils will be expected to pick up the tab, but the money is just not there.

How is this "supporting the most vulnerable"? As far as I can see it's just making those "most vulnerable" not their problem, passing the buck, handing over responsibility, and ultimately not giving a toss as long as their bottom line isn't affected.

Here is a letter from the DWP about the closure of the ILF:

"Thank
you for your recent correspondence, raising issues arising from
Government policies which are the responsibility of this Department.
Government Ministers receive a large volume of correspondence and they
are unable to reply personally on every occasion. I have been asked to
respond to some of your points.There
are just over 19, 000 ILF users. There are approximately 13,000 users
in England, 3,000 in Scotland, 2,000 in Wales and 750 in Northern
Ireland.The average weekly ILF payment is £347. The most common use of ILF funding is to pay for personal assistants. There
are approximately 3,000 Group 1 users (joined pre-1993). While many
Group 1 users receive some support from their local authority, this
input is not part of their ILF eligibility criteria. There are
approximately 16,000 Group 2 users (joined in or after 1993). Group 2
users have care packages which include a minimum contribution of £200
per week from their local authority. 94%
of ILF users receive support from both the ILF and the local authority.
Around 41% of these users receive direct payments from both the ILF and
their local authority but under different eligibility and charging
functions. Around 1, 200 ILF users do not have a known local authority
contribution to their care package.Having
carefully considered all the responses to the consultation, the
Government believes that closing the ILF in 2015, with funding devolved
to local government in England and the devolved administrations in
Scotland and Wales, is the best way forward. The significant changes in
the wider system of care and support for disabled people mean that the
care and support needs of current ILF users can, and should, be met
within a single cohesive system. It is not justifiable to continue to
support those disabled people who were ILF users when the fund closed to
new applications, in a different way from other disabled people with
similar needs. I can reassure ILF users that the Government remains
fully committed to maintaining current ILF user’s care packages up to
April 2015.We
believe that individual local authorities are best placed to provide
locally tailored funding and services integrated around individuals’
needs through direct payments and personal budgets. Local Authorities
already have a statutory responsibility to assess and fund the care
needs of all disabled people – those who have been ILF users and those
who have not. Over 18,000 existing ILF users already receive expert
assessment and a contribution to their care funding through their Local
Authority and discretionary ILF payments and have never taken precedence
over this. However, operating the ILF in addition to the mainstream
care and support system has duplicated functions and created unnecessary
bureaucracy for both users and local authorities."

I don't find that letter satisfactory. It offers absolutely no assurance that people will continue to get the support they need to continue to livetheir own lives as we all have the right to.

Sunday, 25 November 2012

This is my response to this letter: http://misplacedmarbles.blogspot.co.uk/2012/11/letter-from-esther-mcvey-dated-17th-nov.html Dear Ms McVey,Thank you for your reply to my letter dated 12/10/2012, on support for disabled people.I'm
glad to see you take on board the importance of ensuring disabled
people have the right support in place, and in jobs that suit individual
requirements. However, some of my points have not been addressed, so I
feel the need to write back asking for clarification.You haven't really addressed the point that there are some disabled people for whom work is not a realistic expectation. There
are those with life-limiting conditions who may not wish to spend their
final months on Earth sitting in the Jobcentre chasing menial and
minimum-wage work. There are people living with conditions that cause
relentless chronic pain and fatigue where going to work would render
them unable to do anything else, once back home. People with profound and multiple impairments who require 24 hour
care may wish to enter work with a lot of support, but pressure should
not be put on people to enter the very competitive world of the "jobs
market" when they can't compete on a level playing field.Why are people who can't participate in the regular working world
expected to live on a pittance, fighting a cruel system for every penny
that is begrudgingly given, government who on the whole persist in
selling the line that disabled people are scroungers? When MPs
themselves commit far more fraud than benefit claimants (some 30%
involved in the expenses fraud scandal, compared to 0.5% of benefit
claimants.)Given the closure of the Independent Living Fund which supported
those who are so profoundly impaired they require 24 hour care, or would
need to live in institutions, how can you even think of saying your
government wants to help the most vulnerable? Council budgets are being
slashed, social care is only going to those in desperate need, so what
is going to replace the ILF? Access to Work will clearly help those who are in work, with
work-related costs. But for support with life outside work. PIP will
have a smaller caseload, so there will be more disabled people going
totally unsupported with daily living tasks. What are we supposed to do?
What will the estimated 100,000 disabled people who lose Motability
vehicles supposed to do? How will they remain independent, or if
working, remain in work having lost their accessible transport?I have heard the line "we have consulted extensively with disabled
people and disabled people's organisations." before, but I'm having
trouble believing it without seeing evidence.thanks
to an FOI request by Disabled People against the Cuts I found the
following organisations were met with during PIP consultations, but very
few had positive things to say:

Of that list, the following
organisations publicly do not approve of your reforms, having real
concerns for how disabled people will fare if the reforms go through as
planned.

Mencap: "Mencap’s chief executive, Mark Goldring, said: “We are extremely
disappointed by the government's rejection of the Lord’s amendments, and
failure to listen to the concerns of disabled people and their
families."

The RNIB: "This report adds to a growing evidence base that shows the Government
cannot follow through on its Big Society agenda and its commitment to
give disabled people control and independence by stripping away the very
benefits and services that enable them to take part in our communities"

Mind: "we are still very worried about
the impact the introduction of the new
assessment will have on people with mental health problems." "we remain
unconvinced that the breadth and detail of activities to be
considered is sufficient to properly capture the barriers to
participation faced by people with mental health problems"

Scope: "Scope warns that the government is in danger of repeating mistakes with its new benefit assessment.

The charity says that up to two million disabled people risk losing
essential financial support because the new £6 billion Personal
Independence Payment, introduced to replace Disability Living Allowance
(DLA), will use a flawed eligibility assessment."

Leonard Cheshire: "There have been some positive changes agreed in the Lords, but
as the plans stand there are still real fears that many thousands of
disabled people will be pushed into poverty and financial hardship if
they are found ineligible for support through the new Personal
Independence Payment"

The National AIDS Trust: "NAT does not
consider the proposed functional assessment a more accurate method for
identifying disability-related needs than the existing DLA assessment"
"NAT is extremely concerned that the reform process is being driven by a
pre-determined 20% budget cut" "The decision to focus PIP on those with
‘greatest needs’ is also a move away from the principles of DLA"

Capability Scotland: "These amendments could be the difference between
a family being able to heat their home and put food on the table
and complete financial devastation. Unfortunately the UK
Government does not have a great track record on listening when it
comes to Welfare Reform"

Joint response from Centre for Mental Health, Hafal,
Mind, Rethink, The Royal College
of Psychiatrists and the Scottish Association for Mental Health: "We do not support
the objective of an overall reduction target for the basis of DLA reform – the
reform should be based on supporting disabled people to lead fulfilling lives
and not primarily concerned with reducing costs."

"We are concerned about the focus on those with
‘greatest need’ – this may be counterproductive and significantly disadvantage
those eligible to lower rates of benefit, who may still have high disability
costs."

Citizens Advice: "A benefits cap is just one of a number of welfare reforms that
will have a disproportionate impact on some of the most vulnerable
families, including children, breadwinners who have lost their job, and
others forced to give up work because of illness The government is right
to try and simplify a benefits system which is far too complex, but
unless some safeguards are put in place the combined impact of these
sweeping welfare reforms and huge cuts will be catastrophic for a lot of
families already stretched to the limit."

MS Society "The MS Society, along with other major charities, have today urged the
Government to pause the Welfare Reform Bill and carefully consider the
future of Disability Living Allowance" http://www.mssociety.org.uk/ms-news/2012/01/major-charities-call-pause-on-welfare-reform-billSense "Sense is deeply concerned the Government’s decision to get rid of the
automatic entitlement to DLA mobility component for deafblind people
will leave many out in the cold and the needless bureaucracywill create
confusion and cost the tax payer more. The Government’s short
sighted focus on disabled people with solely higher needs means
preventative support will be slashed. This financially irrational
approach is not sustainable and will cut many deafblind people off from
participating in society"

And as for your press office being
open 24/7, maybe you need to tell your fellow MPs to check with them
before talking to the media. Your own colleagues are using inaccurate
statistics and wrong information - Ian Duncan Smith linking DLA with
in-work benefits, when it isn't. Repeated use of the "30% growth in DLA"
figure, which is inappropriate as it includes children and older adults
- when PIP will only apply to working age people, so relevant growth is
only about 14% when demographics are accounted for. Whenever a minister
talks about fraud they use the 5 Billion punds figure - but that is
fraud AND ERROR - Approx £1 Billion is claimed fraudulently and £4
Billion lost through DWP error! Add to that the £17 Billion
UNDERCLAIMED, and the fraud figure pales into near insignificance.
However I've not heard Ian Duncan Smith mention the huge amount
underclaimed.

Saturday, 24 November 2012

Lewisham Hospital's A&E is being threatened with closure. Not because it is failing - almost the reverse. It is doing really well, and has recently been renovated. No, because the Queen Elizabeth Hospital in Woolwich is bankrupt, the administrator wants to close Lewisham to drive more business to the Queen Elizabeth, meaning they get more funding!

Lewisham Hospital serves a borough with a large population - nearly 250,000 people - as well as taking in people from surrounding boroughs if, for whatever reason, they can't go to their local hospitals.

If Lewisham A&E closes, its maternity and ICU services will be reduced as emergency care on site won't be possible.

If Lewisham A&E closes, people will have to travel further on public transport to get to other hospitals - the QE or Kings College Hospital. The QE, for me, is an hour by buses, and then a 10 minute walk. If I'm sick enough to need to go to A&E, I don't want to have to sit on one bus for 20 minutes, wait at a bus stop, sit on another bus for 20 minutes, and then walk 10-20 minutes from the bus stop to the A&E department. Kings is a great hospital, but it already serves a large population, and is already very busy and overstretched.

How many people will end up more impaired by extended waits to get to A&E? Strokes, heart attacks, loss of blood - these things need very rapid treatment. An ambulance taking 15 minutes longer to get someone to hospital reduces survival rates by a huge amount, and those who do survive are likely to have poorer outcomes and live with unnecessary impairment afterward.